Raising the Digital Profile of Facial Palsy: National Surveys of Patients' and Clinicians' Experiences of Changing UK Treatment Pathways and Views on the Future Role of Digital Technology

Ala Szczepura, Nikki Holliday, Catriona Neville, Karen Johnson, Amir Khan, Samuel Oxford, Charles Nduka

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Abstract

BACKGROUND: Facial nerve palsy leaves people unable to move muscles on the affected side of their face. Challenges exist in patients accessing facial neuromuscular retraining (NMR), a therapy used to strengthen muscle and improve nerve function. Access to therapy could potentially be improved through the use of digital technology. However, there is limited research available on patients' and clinicians' views about the potential benefits of such telerehabilitation based on their lived experiences of treatment pathways. OBJECTIVE: This study aims to gather information about facial palsy treatment pathways in the United Kingdom, barriers to accessing NMR, factors influencing patient adherence, measures used to monitor recovery, and the potential value of emerging wearable digital technology. METHODS: Separate surveys of patients with facial palsy and facial therapy specialists were conducted. Questionnaires explored treatment pathways and views on telerehabilitation, were co-designed with users, and followed a similar format to enable cross-referencing of responses. A follow-up survey of national specialists investigated methods used to monitor recovery in greater detail. Analysis of quantitative data was conducted allowing for data distribution. Open-text responses were analyzed using thematic content analysis. RESULTS: A total of 216 patients with facial palsy and 25 specialist therapists completed the national surveys. Significant variations were observed in individual treatment pathways. Patients reported an average of 3.27 (SD 1.60) different treatments provided by various specialists, but multidisciplinary team reviews were rare. For patients diagnosed most recently, there was evidence of more rapid initial prescribing of corticosteroids (prednisolone) and earlier referral for NMR therapy. Barriers to NMR referral included difficulties accessing funding, shortage of specialist therapists, and limited awareness of NMR among general practitioners. Patients traveled long distances to reach an NMR specialist center; 9% (8/93) of adults reported traveling ≥115 miles. The thematic content analysis demonstrates positive attitudes to the introduction of digital technology, with similar incentives and barriers identified by both patients and clinicians. The follow-up survey of 28 specialists uncovered variations in the measures currently used to monitor recovery and no agreed definitions of a clinically significant change for any of these. The main barriers to NMR adherence identified by patients and therapists could all be addressed by using suitable real-time digital technology. CONCLUSIONS: The study findings provide valuable information on facial palsy treatment pathways and views on the future introduction of digital technology. Possible ways in which emerging sensor-based digital technology can improve rehabilitation and provide more rigorous evidence on effectiveness are described. It is suggested that one legacy of the COVID-19 pandemic will be lower organizational barriers to this introduction of digital technology to assist NMR delivery, especially if cost-effectiveness can be demonstrated.

Original languageEnglish
Article numbere20406
Pages (from-to)e20406
JournalJournal of Medical Internet Research
Volume22
Issue number10
DOIs
Publication statusPublished - 5 Oct 2020

Bibliographical note

©Ala Szczepura, Nikki Holliday, Catriona Neville, Karen Johnson, Amir Jahan Khan Khan, Samuel W Oxford, Charles Nduka. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.10.2020.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

Funder

This research was funded as part of the FRAME programme (Facial Remote Activity Monitoring Eyewear: An inconspicuous, non-invasive, mobile sensor device for real-time control of assistive technologies through facial expression) which is supported by the National Institute for Health Research (Reference Number II-LA-0814-20008).

Keywords

  • Bell’s palsy
  • facial nerve paralysis
  • patient experience;
  • treatment pathway
  • facial exercise therapy
  • neuromuscular retraining
  • treatment adherence;
  • digital technology
  • outcome measures
  • telerehabilitation
  • biosensors
  • COVID-19.
  • Bell palsy
  • COVID-19
  • patient experience
  • treatment adherence

ASJC Scopus subject areas

  • Health Informatics

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